IBS GLOBAL IMPACT REPORT 2018 - Gastrointestinal Society

IBSG L O B A LI M PA C TR E P O R T2 0 1 8

With significant contribution from the Gastrointestinal Society

Uncovering the true burden of irritable bowel syndrome (IBS) on people’s lives

This report has been funded and facilitated by Allergan

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IBS Global Impact Report 2018

This report provides insight from peer-reviewed journals and findings from clinical surveys on the impact of living with the symptoms of IBS and individuals’ personal experience of the clinical management of their symptoms.

This edition follows the 2016 IBS Global Impact Report,1 which presented key evidence outlining the

individual, societal and healthcare burden of irritable bowel syndrome (IBS) globally. It found that IBS places a

significant burden on society due to direct and indirect healthcare costs, and highlighted that despite its high

prevalence, IBS does not receive the attention it deserves.1 Finally, it aimed to stimulate discussion on how

people with IBS may receive better management to improve outcomes. The Steering Committee of the report

recommended the following actions:1

IBS guidelines - there is a need for simple guidelines that are applicable to everyday clinical practice, to

help healthcare professionals (HCPs) diagnose and manage IBS with more certainty.

Documenting the impact - there is a growing body of evidence to suggest that there are significant hidden

costs of IBS; more research is needed to reveal the true costs of IBS. HCPs should ask individuals about

the impact of IBS on their overall quality of life (QoL), as accurate assessment can be a crucial indicator of

condition severity.

Further research - a greater understanding of inefficiencies in IBS management may lead to an evidence-

based, standardised approach to IBS care in the future.

Allocation of resources - HCPs, commissioners and decision-makers should consider directing resources

to those individuals with more severe symptoms and therefore highest need. In some countries, this could

be delivered through IBS-specific models of care.

The present report looks beyond an investigation into the impact of IBS on daily life, to wider aspects

including the impact on psychological wellbeing, and stigma and attitudes about IBS, as well as the

challenges faced by people with IBS in navigating complex healthcare systems to seek appropriate

support and management.

ABOUT THE IBS GLOBAL IMPACT REPORT 2018

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Steering Committee Members and Their Roles

Declarations of Interests

This report represents a consensus view of the members of the Steering Committee. Both Professor Maura

Corsetti and Professor Jan Tack are clinical experts and sat on the Steering Committee for the 2016 IBS Global

Impact Report. Gail Attara is the Gastrointestinal Society’s chief executive officer, and Michelle Sewell is a

person living with IBS. Together, Gail and Michelle bring the perspective of Canadian individuals living with IBS

to the report.

The report was funded and facilitated by Allergan, and coordinated by a secretariat service provided by

HAVAS Just::.

Maura Corsetti is a consultant for Allergan and Kyowa Kirin and has acted as speaker for Shire and Menarini.

Jan Tack has given scientific advice to Abide Therapeutics, AlfaWassermann, Allergan, Christian Hansen,

Danone, Ironwood, Janssen, Kyowa Kirin, Menarini, Mylan, Novartis, Nutricia, Ono Pharma, Rhythm,

Shionogi, Shire, SK Life Sciences, Takeda, Theravance, Tsumura, Yuhan, Zealand and Zeria pharmaceuticals;

he has received a research grant or support from Abide Therapeutics, Shire, Tsumura, Zeria and has served on

the speaker bureau for Abbott, Allergan, AstraZeneca, Janssen, Kyowa Kirin, Menarini, Mylan, Novartis, Shire,

Takeda and Zeria.

Gail Attara and Michelle Sewell do not have any declarations of interest.

Professor Maura Corsetti Clinical Professor of Gastroenterology,

University of Nottingham, UK

Gail Attara

President and Chief Executive Officer,

Gastrointestinal Society, based in Vancouver,

Canada.

Professor Jan Tack

Head of Gastroenterology, Professor of

Internal Medicine, University of Leuven,

Belgium.

Michelle Sewell

IBS Support Group representative for the

Gastrointestinal Society, based in Vancouver,

Canada

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FOREWORD 05

EXECUTIVE SUMMARY 06

FAST FACTS: ABOUT IBS 07

RECOMMENDATIONS: A VISION FOR INDIVIDUALS WITH IBS 08

1. IMPACT ON QUALITY OF LIFE 11

Summary 11

1.1 Impact of the symptoms of IBS: Validating IBS 12

1.2 Impact of IBS on working life 17

1.3 Impact of IBS on social life and relationships 20

1.4 Impact of IBS on personal finances 24

2. PSYCHOLOGICAL IMPACT AND ATTITUDES 27

Summary 27

2.1 Psychological impact of a diagnosis of IBS 28

2.2 Perceptions and social attitudes to a diagnosis of IBS 30

2.3 Perceptions and attitudes of healthcare professionals to people with IBS 32

3. THE PATIENT JOURNEY AND CHALLENGES TO ACHIEVING TREATMENT 35

Summary 35

3.1 Experiences of navigating the healthcare system as a patient 36

4. FINDING SOLUTIONS TO ACHIEVE MORE EFFECTIVE SYMPTOM CONTROL 41

Summary 41

4.1 Achieving more effective symptom control in IBS:

What should physicians and other healthcare professionals do? 42

4.2 Improving communication: What should people with IBS do? 45

4.3 The need for simple, evidence-based guidelines for IBS 46

GLOSSARY 48

REFERENCES 51

ADDENDUM 55

CONTENTS

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I am the president and chief executive officer of two registered charities, the Gastrointestinal Society

and the Canadian Society of Intestinal Research, which was founded in 1976. They have been using the

BadGut® brand for more than 20 years.

At the Society, every day we get calls from individuals with digestive problems, many of whom have IBS,

which affects approximately 13-20% of Canadians. They share their struggles living with the condition,

including how it affects their physical condition, social life, working life, relationships, and psychological

wellbeing. They tell us how their journey to diagnosis and finding an effective treatment can be a time-

consuming trial. Many express a lack of support from friends, family and employers, whether because of

the taboo to talk about their symptoms, or because many don’t take IBS as seriously as they should.

I encourage you to read through this thoughtful impact report, which includes many previously

unpublished comments in the words of those who experience IBS on a daily, and sometimes hourly,

basis. By combining so many patient voices with comprehensive research, this report shows the plethora

of ways that IBS affects those with this condition.

Our responsibility to the person with IBS is to work collaboratively with all those involved in IBS

management to encourage change within the system. We need to challenge the perceptions that

surround IBS, and make sure that individuals are listened to, not teased, when they mention any of the

ABCDs of IBS, namely abdominal pain, bloating, constipation, and/or diarrhea. We must end the stigma

that surrounds IBS and ensure it is recognized as a true medical condition, one that needs management,

effective treatments and understanding.

With our sights set firmly on the future, our vision is for the management and care of those with IBS to

be consistent and effective. This report highlights examples of clinical best practices, puts forward a

set of patient expectations for care, and makes a series of recommendations aimed at HCPs involved

in IBS management. Together, these provide a roadmap for change. Only by working together and

encouraging a collaborative approach can the challenges faced by individuals with IBS be addressed so

they can transform from a life of striving to one of thriving.

Gail AttaraPresident and Chief Executive OfficerGastrointestinal Society

FOREWORD

6


IBS is a chronic bowel disorder that significantly impacts people’s lives. People with

IBS frequently report feeling depressed, embarrassed, self-conscious, and an inability

to predict symptoms, which places significant burden on daily living. The condition

has a negative effect on the quality of relationships and limiting participation in routine

social activity.

Many of those with IBS believe that they are not taken seriously and a diagnosis of IBS

can leave them feeling stigmatised. Some who have IBS may be discouraged from

seeking medical help because they believe that they will not be heard by the HCP, and

absence of effective support may also contribute to feelings of social isolation.

On average, it takes four years for individuals with IBS to receive a definitive diagnosis.

During this frustrating journey, they will try a range of self-management support

options and will search for advice from a range of sources such as the internet and

newspaper articles. On receiving a diagnosis, people with IBS can still struggle to get

the support and effective treatment that they need.

Guidelines for the management of IBS developed by the Rome Working Group,

the World Gastroenterology Organisation, and several national gastroenterology

societies set out a universal standard of care for IBS but they are not rooted in everyday

clinical practice. There is an absence of simple management guidelines to support an

individualised treatment approach and the lack of standardised pathways contributes

to variation of medical care in terms of symptom control.

Difficulties in communication and lack of time to discuss symptoms or ask questions

are the most common problems experienced by people when interacting with

their HCPs. The importance of a good patient-physician relationship is increasingly

recognised as part of best practice IBS management and improving clinical outcomes.

EXECUTIVE SUMMARY

7


FAST FACTS: ABOUT IBS

IBS is a chronic functional bowel disorder characterised by symptoms of abdominal pain and altered bowel habit (constipation and diarrhoea), in the absence of structural or biochemical abnormalities that are detectable with the current routine diagnostic tools.2-4

According to the Rome IV diagnostic criteria, IBS is characterised by recurrent abdominal pain for, on average, at least one day per week in the past three months, associated with two or more of the following:4

Symptoms related to defecation.

Symptoms associated with a change in stool frequency.

Symptoms associated with a change in stool form or appearance, based on the Bristol Stool Form Scale (BSFS).

Subtypes of IBS are recognised by the Rome IV criteria based on the person’s reported predominant bowel habit, when not on medications, as follows:

IBS-C: with predominant constipation (Bristol types 1 and 2).

IBS-D: with predominant diarrhoea (Bristol types 6 and 7).

IBS-M: with both constipation and diarrhoea (Bristol types 1 and 6).4,12

IBS is the most common condition diagnosed by gastroenterologists and is one of the most frequently seen conditions by primary care physicians (PCPs).2,5

The prevalence of IBS globally is 11%,6 however, it is thought that IBS often remains underdiagnosed.7

Symptom-based criteria of IBS were first developed in 1989 by an international working group based in Rome (the Rome criteria).10 These criteria have been updated in the Rome II, III, and most recently, in 2016, the Rome IV criteria for IBS.4,11,12 However, awareness of the criteria by PCPs is limited and the criteria are often perceived as too complex to use in clinical practice.13

IBS affects both men and women of all ages.6 It is thought only a fraction of individuals with symptoms of IBS seek medical attention.8 Most individuals will initially consult PCPs for

their symptoms, and the factors that drive this consultation are symptom severity, especially pain, and concerns that symptoms might indicate an underlying severe disease, such as cancer.2,9SA

MP

LE

The underlying cause of IBS is still unclear15 and, as there are no diagnostic disease markers for IBS, guidelines recommend HCPs

make a positive diagnosis using criteria that are based on the person’s symptoms.16-21

The symptoms most frequently reported for IBS-C are: abdominal pain, bloating and constipation.4

The symptoms most frequently reported for IBS-D are: abdominal pain and discomfort, abdominal bloating, distension, urgency and diarrhoea.14

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This report captures the immense challenges faced by people with IBS and highlights a need for action that

places the needs of the individual at the centre. IBS places a considerable burden on healthcare systems, and

clinical knowledge relating to diagnosis and treatments is suboptimal.22,23 People with IBS report that they

are not listened to by their HCPs, can wait an average of four years for a positive diagnosis, and once finally

diagnosed, may receive treatments that do not have proven efficacy or a robust evidence base.23,24

Our vision is to ensure that the care of those with IBS is consistent and effective moving forward. People with

IBS deserve the right:

To receive a timely diagnosis such as at the first follow-up visit after the first consultation and, if indicated, investigation cycle.

To feel that they are heard with empathy, that their IBS is taken seriously, and that the impact of their symptoms is validated and acted upon.

To have access to effective, evidence-based treatments that are tailored to meet their individual needs.

These individuals’ expectations are the stepping stone of an IBS Patient Charter that puts the individual at the

centre of their IBS care. The Steering Committee calls for adoption of this framework into a patient charter by

patient groups and professional organisations that support people with IBS across the world.

RECOMMENDATIONS: A VISION FOR INDIVIDUALS WITH IBS

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IMPROVE COMMUNICATION WITH PEOPLE WITH IBS

Recognising the benefit of a good patient-physician relationship in improving clinical outcomes,

physicians should adopt a structured approach, such as the six-point plan produced by the World

Gastroenterology Organisation (see page 44). HCPs should consider the use of explanatory models to help them articulate the underlying

mechanisms, the symptoms of IBS and subsequent treatment approaches in a way that is

meaningful for people. Professional bodies, medical organisations and patient groups should share the patient materials

that they produce to ensure that individuals have access to relevant tools to help them capture and

communicate to their physicians the full impact of IBS on their daily lives. Objective measures should be adopted to capture the complete burden of IBS, including missed

work days and missed social occasions.

DRIVE EARLY DIAGNOSIS OF IBS

There is a need for a simple and practical diagnostic algorithm that can enable HCPs to quickly

recognise the symptoms of IBS and equip them with the confidence they need to identify IBS and

communicate the diagnosis to their patients. National diagnostic criteria and coding systems should be updated to ensure that IBS is coded

accurately.

DEVELOP SIMPLE, PRAGMATIC GUIDANCE FOR IBS MANAGEMENT

Design simple management guidelines that are applicable for everyday clinical practice. They should

be based on emerging models of care that consist of a stepped approach to treatment tailored to

each person, according to individual symptoms, disease impact and preferences. IBS management guidelines should prioritise IBS treatments according to their proven efficacy. In countries in which it does not already exist, professional bodies, medical organisations and patient

groups should join forces to develop and make available evidence-based information for people with

IBS to enable them to make informed decisions regarding their IBS treatment.

1

2

3

Healthcare professionals have a critical role to play to support this vision as follows:


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IMPACT ON QUALITY OF LIFE

Summary*

People with IBS frequently report feeling depressed, embarrassed

and self-conscious. Their inability to predict symptoms places

significant burden on daily living. IBS limits productivity and

performance at work, has a negative effect on the quality of

relationships, and limits participation in routine social activity.

Due to the often unpredictable and persistent nature of the

symptoms, people with IBS make considerable life-limiting changes,

and the full impact of the condition is often under-reported to HCPs.

IBS also has a personal financial burden with individuals sometimes

trying multiple over-the-counter (OTC) treatments and alternative

therapies in their quest to be symptom-free; costs can be significant

due to the lack of information about the effectiveness of these

purported remedies.


11

* This summary reflects consensus opinion of the Steering Committee.

Those with IBS have significantly impaired QoL.3 The symptoms of IBS can have a substantial ‘dampening’ effect on

daily life due to their frequency, severity, unpredictability and persistence, which means that sufferers often need to

make lifestyle alterations in order to accommodate their IBS.26-29 These significant re-orderings of daily life are not always

revealed to treating physicians however, leading to under-reporting of both symptom severity and frequency.26

As symptoms can be unpredictable in nature, people with IBS often worry about when they may occur.29,30 In a

2004 study of over 500 IBS-D patients, 37% agreed with the statement ‘I’m constantly worrying about when

the IBS symptoms will return.’ 30

The American Gastroenterology Association (AGA) conducted a survey of 3,254 IBS patients, both diagnosed

and undiagnosed, to understand the impact that IBS has on people’s lives.24 The survey showed that in 65-70%

of cases, people with IBS reported being symptom-free for a few days before their symptoms returned.24

In an international online survey involving 513 IBS-D patients, the majority reported that they experience

intermittent symptoms anywhere from 8-17 days per month.31 In a European survey of 450 respondents,

those with IBS-C reported that they experience symptoms for an average of 10.5 days per month.32

Living with IBS is very difficult. I like to travel and I always have to know where

a washroom is and I have to travel with a bucket and wet wipes in my vehicle

and my purse. I carry extra underwear every day in my purse.

Impact of the symptoms of IBS: Validating IBS

Canadian person living with IBS25

1.1

Daily activities for many people with IBS tend to be centred around two factors: managing symptoms and their treatments.27 A 2009 study identified four main perceptions for the daily activities of patients with IBS: ‘not being in control’, ‘not being able to trust their bodies’, ‘invasion of privacy’ and ‘loss of dignity’.29


12

Australian person living with IBS33

Imagine a day where you feel ill from having eaten too much,

then imagine that day lasts months at a time.

The extent to which managing the daily symptoms takes a toll on daily living can be demonstrated by

investigating what individuals would be prepared to give up or risk in order to live symptom-free.28

Patients reported

they would give

up 25% of their

remaining life

(approx. 15 years)28

46% of IBS-D

patients agreed

with the statement

that “I’m willing to

try anything to help

manage my IBS”30

11% agreed

with the statement

“when my IBS is bad I

wish I was dead”30


13

It’s like you’re always on a roller coaster. Something that I could eat today with

no issues, could cause me to feel like death tomorrow. Fear that the lack of

understanding and acknowledgement of this disease can leave me feeling like

I can never tell people what is truly wrong.


I have learned thru [sic] some really bad experiences to wear layers of

protection. Pads or liners don’t do it. You need to wear torn up sheets/towels –

anything to keep you from soiling everything.


I spent the night in the hospital in extreme, extreme pain. They did every test

possible – they thought it was a burst ovary – and after a CT scan, they said it

was just extreme constipation as a complication of untreated IBS.


14% said

they would risk a

1/1000 chance

of death to live

symptom-free28

In an international survey of 1,966 IBS sufferers, on average:

In an international survey involving 513 IBS sufferers, on average:


14

French person living with IBS33

I wake up and need to go to the bathroom, I usually urgently need to

go. In the mornings, I need to go five to six times, until about 10 am.

Then it calms down a bit and it starts again in the afternoon.

From the findings of the AGA survey (with more than 3,400 respondents), the emotional experiences of

patients with IBS-D were characterised by an inability to predict symptoms that caused embarrassment

and patients were forced to be always near a bathroom.35

47% of respondents with IBS-D stated that they had little or no ability to predict their symptoms on a

daily basis.

When asked how IBS-D affects them, 81% stated that they avoided situations where there was no

nearby bathroom.

In addition to frustration, the most common emotions experienced by respondents with IBS-D included

self-consciousness and embarrassment.35

In an international survey of over 500 IBS-D patients, 25% agreed with the statement that,

“having IBS-D stops me enjoying life”.30 A review also showed treating IBS-D can improve

health-related quality of life (HRQoL).14

Effects of symptoms of IBS-D on quality of life


15


Not feeling well most of the time and when going on holidays it’s

very stressful because I’m dependent on restaurant foods and then

dealing with constipation for the entire trip.

From the same survey conducted by the AGA, the emotional experiences of patients with IBS-C were

characterised by attempts to self-treat with numerous over-the-counter (OTC) medications, leading to

frustration, dissatisfaction, and depression.35 Respondents with IBS-C were likely to be taking two or more

types of OTC drugs each month.35

32% of IBS-C respondents reported feeling depressed because of their condition almost every

day in the previous month.35

When asked how IBS-C affected them, 76% said they did not feel ‘normal’ and 64% stated that

they felt ‘self-conscious’ about how they looked.35

HRQoL for those with IBS-C is low compared to those with chronic conditions such as diabetes, heart failure

and heart defects, who have a high rate of mortality,15 and also those with asthma, migraine and rheumatoid

arthritis, with well-known morbidity.36

Effects of symptoms of IBS-C on quality of life

The symptoms of IBS can overlap with other conditions and research also indicates that IBS can often co-exist with

other functional disorders of the upper and lower gastrointestinal system.3,37 These include: functional dyspepsia (FD),

heartburn, gastroesophageal reflux disease (GORD) and nausea as well as incontinence, and disturbance of pelvic floor

muscular coordination (dyssynergia).3 The presence of several functional GI disorders probably reflects underlying

physiological processes, such as problems with motility control or intense pain within the inner organs.12,38 The overlap

between IBS and FD has been found to be between 75% (IBS-D and FD) and 85.5% (IBS-C and FD).39 Meanwhile, in a

study of 100,000 individuals, of those meeting the criteria of one or more of the conditions of GERD, FD, and IBS, 30.7%

had overlap between two or all three conditions.40 With increasing age, the likelihood of co-morbidity increases; this may

aggravate the symptoms of IBS, or lead to a delay in the diagnosis of IBS.41

Co-morbidity in IBS:


16

Inability to function normally – severe fatigue, severe [gastrointestinal] GI

symptoms and urgency, difficulty being out of house, extremely limited diet,

no matter what I do symptoms are worsening and regularly flaring. Cannot

work, have kids. Have sought medical care over and over with not much help,

often dismissed and not taken seriously.


Exhaustion from lack of sleep when I’m having a bad bout in middle of night. I

generally go every 10 minutes for about 4-5 hours then it stops.


Fatigue in IBS:

A 2013 study involving 175 patients with moderate to severe IBS showed that fatigue was reported as a

symptom in over 60% of patients with IBS, compared with 5-20% of the general population.42 Similarly,

in a 2016 systematic review across 24 studies, 54% of those with IBS experienced symptoms of fatigue, with

gastrointestinal symptoms, psychological symptoms and reduced HRQoL being the most common correlating with

symptoms of fatigue.43 However, the underlying cause for fatigue co-morbidity is not known.43

A 2016 study of 160 IBS patients found that fatigue affected their ability to perform work, physical activities

and domestic activities, and also their ability to interact socially.44 Additionally, more severe fatigue was

accompanied by more severe IBS symptoms, depression and anxiety. It was recommended that fatigue, as a

symptom of IBS, should be treated to improve patient QoL.44


‘I feel teary eyed when I have to tell you this. It really does stop

you from a lot of things in life like going away – you’re always

afraid that something’s going to happen. Or if I do go away

– where is the closest hospital? And am I going to ruin

everybody’s good time?


17

Data collected via a 2014 patient reporting, market research and surveys have highlighted that living with IBS affects the

ability to work.22 However, there is a surprising lack of studies regarding the impact of IBS on work and loss of earnings.22

A European survey has shown that people with IBS are twice as likely to take time off work than those without

IBS.32 Higher rates of absenteeism, presenteeism, and impairment in performing daily activity were observed

regardless of IBS subtype compared to non-IBS population.32 Using the work productivity and activity impairment

score (WPAI), individuals diagnosed with IBS-D (n=859) and IBS-C (n=450) had an average work productivity loss of

31.4% and 33.3% respectively compared to 19.6% for individuals not diagnosed with IBS (n=59,155).32

Sometimes I cannot do the things I want to do… I’ve missed out on social

events…symptoms affected work, and I missed some days off work. Currently

unemployed, partly because of being off sick due to IBS.

Impact of IBS on working life


1.2

I have not been able to work because I am regularly having to use the

bathroom for my bowels. When I do have to use the bathroom I am in there a

long time, and this would not be acceptable at any job. I also cannot socialize

or go to fun places because of this. Therefore, I don’t go far away from my

home anymore…I know that food often causes issues quickly for me, so I am

always scared to eat when I am not at home.



18

The International Foundation for Functional Gastrointestinal Disorders (IFFGD), in collaboration with the

University of North Carolina (UnC) Center for Functional GI and Motility Disorders, conducted a survey of 1,966

patients with IBS in the US.46 The survey: ‘IBS Patients: Their Illness Experience and Unmet Needs’ found that:

13% of respondents were

unemployed due to their health status.46

Of those unemployed, nearly one-third

(30%) of participants with severe

symptoms were jobless due

to their health compared to 5% for

participants with mild symptoms.46

In the AGA survey, patients with IBS reported that their symptoms:

Interfered with their productivity and

performance during an average of nine days per month.24

Caused them to miss school or

work for an average of two days per month.24

Furthermore, a survey of 2,961 patients with IBS (both with and without a formal diagnosis) conducted by the

Gastrointestinal Society in Canada showed that 46% had missed work or school due to IBS symptoms.47


19

20% of IBS-D patients agreed with the statement ‘My IBS has badly affected my working life.’ (Survey of

over 500 IBS patients in France, Germany, Italy, Spain, UK, Canada, and Australia)30

A 2016 study of 58,161 respondents (859 diagnosed ISB-D; 370 undiagnosed IBS-D; 56,932

controls) showed that patients with IBS-D found that they have significantly greater

impairments in work productivity and daily activities, compared to controls.48

Those with severe IBS-D had a significantly lower rate of labour force participation (48%)

compared with those with moderate (65%) or mild (67%) IBS-D.48

IBS-D patients also reported up to 15 missed work days in a year due to their symptoms

(compared to 11 days for the control group).48

A focus on IBS-D and work productivity

In a cross-national survey of more than 271 employed people with IBS-C in the EU, those with IBS-C had a

significant reduction in work productivity relative to controls, amounting to almost two hours more of missed

work per week and a twofold reduction in work productivity compared to controls.49

Another survey32 of 450 patients across Europe with IBS-C found that those with IBS-C had:

33.3% reduction in work productivity vs 19.6% for healthy controls

11.8% absenteeism vs 5.3% for healthy controls

A focus on IBS-C and work productivity


20


People would be knocking on the door of the loo, ‘Come on, the next meeting’s about

to happen. You’ve got hurry up, mate.’ They didn’t get it. I couldn’t get out of that loo,

until I finished whatever the heck was going on. Eventually, I got so sick because of the

diarrhoea, I started to be a bit run-down and I was losing weight. Then, the company

moved me to part-time work, said, ‘Maybe take a bit of time out, just get yourself

sorted.’ I went part time. They shifted me to a lower demanding job.

Beyond the effects that the symptoms of IBS have on work productivity and efficiency, the associated psychological

distress caused as a result of IBS has been shown to affect general physical and mental health.50 A review of the

psychosocial impact of IBS, published in 2015, showed that patients with IBS reported high rates of psychological

distress, with depression and anxiety, that resulted in reduced productivity at work.50

People living with IBS often report the significant impact it has on their daily activities, social life, and relationships.26,27,47

Much of this has been captured in patient surveys, which allow patients time to provide detailed information on their

symptoms and impacts.24,46,47 A Canadian survey that was completed in 2016, showed that IBS affects personal, social,

and working life.47 People with IBS have described difficulties with eating and with basic tasks that require exertion,

difficulty interacting socially with friends and family, limitations on their ability to work, and the emotional impact of their

condition on themselves and their caregivers.27

Impact of IBS on social life and relationships1.3

It is frustrating, depressing, and controlling. It can take over and prevent any

fun in life.

It is socially isolating. It is a dietary nightmare. On bad days, it makes me want to cry.

Canadian individuals living with IBS25

It rules your whole life. Even when I make plans, I have to cancel at the last

minute because of sudden symptoms.


21

I cannot make plans ahead as I never know when it will affect me. [I’m] not

able to work because I never know when I will have to call in that I am unable

to work. [I]solation, fear, always feeling that I smell.


The same Canadian survey also showed that 32% either ‘always’, or ‘often’ experience limitations to their social activities

in an average month.51

In the Canadian survey involving 2,961 respondents, 76% of respondents stated that their symptoms interfered with daily

life, with 37% stating that they “did not leave home when they had symptoms of IBS-D”.47


22

A study published in 2017 involving 1,094 respondents into people with IBS-D found that IBS significantly affects QoL.52

Of the patients in the study, those with diagnosed IBS-D reported:

Avoiding taking a trip/long journeys because they did not have access to the bathroom

It really sucks because I never know when I’m going to have an attack and IBS

continually has me cancelling plans.


The symptoms of IBS also affect intimacy and personal relationships.53 For women with IBS, an association with painful

sexual intercourse (dyspareunia) has been reported since the 1980s, when a study comparing sexual function in

women with IBS, inflammatory bowel disease, and duodenal ulcers showed a prevalence of painful sexual intercourse

(dyspareunia) in 83%, 30%, and 16% of women respectively.54 The 2016 AGA study highlighted that nearly two-thirds

(64%) of IBS-C patients and 55% of respondents with IBS-D reported that they “avoided having sex” because of their

symptoms.35

Effects of IBS on relationships:

If your internal system is off, your mind is off. It affects your entire day, your

mood and can affect relationships.


I find it very stressful and it puts a strain on relationships as one never can

commit 100% to something.


Cancelling or changing plans at the last minute

Avoiding eating completely for several/many hours before or during certain important events (e.g., meeting, child’s soccer

game, night out with friends/partner)

Missing or skipping an event that would be somewhere with poor access to a bathroom (e.g., outdoor event, hiking)

Missing work

Avoiding dinner/social occasion with friends because of anxiety over needing to use the bathroom

52%

52%

42%

38%

34%

33%


23

The results of a 2013 study undertaken to quantify the degree of the burden on partners of patients with IBS and to

identify the areas of relationship that were affected, found that partners of patients with IBS had a significant personal

and psychological burden compared with partners of healthy individuals. This perceived burden increased with severity

of IBS symptoms and poorer sexual and relationship satisfaction.55 The study also showed that for partners, this burden

had a major impact on the sexual relationship.55

Effects of IBS on relationships:

It’s very hard on the partner. I have to keep leaving rooms. Very difficult to

have a proper social life as there are so few restaurants I can eat at.

My husband and two teenage children understand, but no one outside of my

household seems to understand if I have to decline invitations.


There need to be studies done to help people get their lives back. You should

be able to go out and have lunch with family and friends instead of worrying

when this will hit you because there is no if, it’s when.

You need to talk to your spouse or friends about it. It is amazing how many

people suffer the same symptoms.

The Steering Committee note that the impact of IBS on partners, or the perspective of partners/carers in living with or caring for someone with IBS is an important domain and that additional research would be beneficial. While research has shown that those with IBS tend to under-report their symptoms26 and learn to “live with their condition”,30 partners and carers witness first-hand the strain and burden imposed by IBS symptoms and, therefore, may provide a more objective overview. Conducting scientific research into the difference in the reporting of symptoms, between patients and partners, could help provide further understanding.*



24

Many people with IBS are dissatisfied with conventional medical therapies and will seek alternative methods of

treatment in the search for symptom relief.30,56 In the lead up to a diagnosis, those with symptoms of IBS will try multiple

OTC treatments,30 and even once a diagnosis of IBS has been made, PCPs may also recommend alternative therapies, or

dietary adjustments,24,57 that have no or limited evidence of efficacy,21,56 and which can result in a financial burden for the

individuals as they seek any type of relief.22

Impact of IBS on personal finances1.4

[I] only use OTC medication as needed, and try to use natural laxatives (senna)

to avoid side effects. [The] financial impact [is]: $40-45/month for laxatives,

stool softeners, and hemorrhoid [sic] treatments.

A 45-year-old female patient from Canada with a five-year history of symptoms of IBS-C. The patient is a former social worker, currently unemployed.45

Prior to a diagnosis, three-quarters of patients in the US report to having tried OTC products before speaking to a

HCP about their symptoms, trying an average of 3.6 OTC products.24 The majority of patients reported taking OTC

medications for a year or less before consulting a HCP.24

Between 15% and 43% of patients pay

out-of-pocket expenses for treatment

to relieve symptoms of IBS.22

As many as 47% of Canadians with

IBS report that they spend more than $150 per month on their IBS treatments to

relieve their symptoms.51

Meanwhile, as many as 26% of Canadian IBS patients admit

they can only afford some

of the IBS treatments

prescribed to them, while 16% say they cannot

afford their medications at all.47


25

In addition to the financial burden of self-management, the Steering Committee note the psychological impact that it can impose on people when their IBS management is unsupported. The Committee noted that there is a tendency among those who have IBS to seek multiple treatments, and to perpetually try new alternative treatment approaches. This journey of cycling through various products and modalities places an additional burden on individuals’ lives. They can be bombarded with information, in particular unfounded claims via the internet, and it is difficult to know which, if any, self-management measures carry benefit. Further information should be made available to patients by the medical community that set out which treatment options are the most beneficial, based on clinical efficacy, and research.*


Complementary and alternative medical therapies include, but are not limited to, acupuncture and probiotics.21,58,59 For

those with IBS, dissatisfaction with current treatment leads them to try alternative approaches.60 The fact that more than

half of those with IBS report to having used complementary and alternative medicine (CAM), 61 indicates dissatisfaction

with current treatment and a willingness to seek non-conventional treatment options.51

A study conducted in 2014 involving 135 respondents showed that intake of certain foods is recognised

to be an important trigger of symptoms in 90% of people with IBS.57 However, the relationship between

food and IBS still remains undefined57 and research continues. A Canadian survey indicated that many have

used, or are currently using, dietary changes, including the low-FODMAP diet specifically, as IBS treatment,47,57 despite

the fact that these diets can be complex, restrictive, and, for some, financially burdensome.57

There is a lack of adequately powered and well-designed randomised, controlled trials pertaining to dietary

intervention in IBS and while many people use dietary changes in attempt to manage their IBS symptoms,

clinical literature highlights that more evidence is required to support any recommendations.57

Self-management: The need for guidance and clarity on evidence


26

PSYCHOLOGICAL IMPACT AND ATTITUDES

Summary*

Many of those with IBS believe that they are not taken seriously and

report a lack of belief on behalf of HCPs that their symptoms are real.

A diagnosis of IBS can leave people feeling stigmatised and they may

often hide their diagnosis from friends and co-workers.

Some individuals with IBS may also be discouraged from seeking

medical help because they believe that they will not be heard and

understood by the HCP. The common absence of medical information

or effective support may also contribute to a person’s feeling of

social isolation.

The chronic nature of the condition carries a psychological burden.

In 40–60% of cases, IBS is accompanied by psychological symptoms

that include depression, anxiety disorders, and post-traumatic stress

syndrome. Because anxiety and depression increase the chances of

developing IBS symptoms, and result from IBS, some people are caught

in a vicious cycle of worsening physical and psychological symptoms.


Patients should not be left feeling alone and confused, and

ultimately not believed about symptoms and how the patient

physically and emotionally feels during flare ups.



27

Patients with IBS suffer psychologically due to the chronic nature of the condition.50 They are also affected

psychologically by the stigma of a diagnosis of IBS and the lack of belief that IBS is real62 and research has shown that

depression and anxiety levels in IBS patients are greater than in controls.50,63,64

Research in 2016 indicates that it is necessary to address both the physical and psychological needs of people with IBS

as early as possible because improving psychosocial symptoms improves the physical symptoms.65

At one time, at the early stage, I lost 20 lbs in about 4 weeks because I

could not eat anything without diarrhea [sic]. I was worried I would lose

so much weight and be unhealthy or die from weight loss. Then I had

a lot of anxiety because I could not go out and do normal things other

people take for granted.

Psychological impact of a diagnosis of IBS


2.1

Between 40-60% of people with IBS suffer from psychological symptoms that include depression, anxiety disorders and post-traumatic stress disorder (PTSD).50,66,67


28IBS has prevented me from having a life. I was and am still hesitant to

go out to dinner or concert or any function. I always get nervous about

my IBS and that stress does not help the situation.


Studies published in 2013, 2014 and 2017 have

shown that anxiety and depression both increase

the chances of developing symptoms of IBS

and result from IBS, which means that some

patients with IBS may develop a vicious cycle

of worsening physical and psychological

symptoms.21,68,69

Studies on functional gastrointestinal disorders

have shown a possible association with early

events causing psychological symptoms and the

development of bowel symptoms, which go on to

form a vicious cycle of cause and effect.68

SYMPTOMS

ANXIETY


29

I wish I could control my IBS, 16 years living with this condition I’ve lost

over 120 lbs, it’s taking a horrible toll on my body physically mentally and

emotionally. [It’s] very depressing and draining having to have lots of visits

with healthcare professionals, gastroenterologists and emergency room visits

just to get the same result: ‘it’s IBS, go home and deal with it’.


Individuals can view their IBS negatively, which causes a range of emotions and feelings.24 In a study of 3,254 people with

IBS, the most common feeling reported when asked how they felt when their GI symptoms were bothering them was

feeling “frustrated”, which was cited by three-quarters of the respondents.24 This was followed by 48% who said their

symptoms made them feel “self-conscious”, 39% “embarrassed”, 37% “fed up” and 34% “depressed”.24

Perceptions and social attitudes to a diagnosis of IBS

2.2

Stigma, or prejudice, can be perceived, experienced or internalised and is the belief or labelling of a person as being

different or abnormal.70 Studies conducted in 2009 and 2014 showed that more than half of those that were

interviewed were treated differently because of their IBS.71,72 The stigma associated with IBS can also result in being

unable to participate in daily activities and social activities.62,72


30

There are many people who suffer (from IBS), but it’s a taboo topic. I don’t

know how many people suffer from it in Spain, diagnosed and undiagnosed,

but there’s no treatment really. How to live with it? De-stigmatise it, so people

do not have to suffer in silence.

Spanish person living with IBS45

Can’t plan anything. End up cancelling due to pain. Excitement and stress

increase painful [sic] symptoms. Bloating and gas is embarrassing. Sharp pains

come out of the blue and make you gasp, and [it] is embarrassing in public.


It’s very hard to live with IBS if some of the people around you write you off

as using IBS as an excuse for not joining in a lot of activities. It takes my self-

confidence away.


The symptoms of IBS can be difficult or embarrassing to discuss,26 and people with IBS hide their condition because

they consider it shameful.73

Due to societal taboos around discussions of bowel functioning, and historically viewing digestive disorders

as psychosomatic, people may experience stigma.72

These factors can lead to internalised stigma and reluctance to tell others about their diagnosis of IBS.29,70

Some individuals with symptoms of IBS may choose to hide the condition except to inform immediate

family members and sometimes friends and co-workers.26

According to research, employers and co-workers are the most likely to make people with IBS feel stigmatised, followed

by HCPs and friends.71

This can severely limit your employment options. It is hard to find a job

where you can go to the washroom whenever and however many times

that you need to. Regular attendance is impossible and absences are

looked down upon. Laziness [sic] and immaturity is often assumed by

others when you call in sick for work or can’t attend classes.



31

Due to its intrinsic link to food, social isolation for those with IBS is often related to meal times.3,57,73 Enjoying meals with friends and family is a common form of social interaction. Therefore, inability to participate because of a fear of IBS symptoms (pain, urgency, diarrhoea or distension) occurring during, or immediately after, a meal can be devastating and can result in social isolation.3,73

People with IBS feel that they are not taken seriously by HCPs72,74 and feelings of stigma from healthcare providers

have been shown to be correlated with more frequent, severe and disruptive IBS symptoms.72 IBS sufferers tend not

to discuss the condition broadly outside close family and sometimes friends, and few discuss the full extent to which

IBS affects their lives with their treating HCP.26 Individuals perceive that doctors do not give credence to the fact

that they are ill and consequently their complaints are not taken seriously. They also report that they can feel

discredited in the eyes of the medical profession when they sense that doctors have failed to recognise the impact of the

diagnosis on their QoL and appear unsympathetic to their concerns.75

Taft and colleagues have highlighted the differences between perceived, enacted, and internalised stigma in chronic

diseases, including IBS.70,72 People with IBS perceive more stigma from their healthcare providers when compared with

patients with inflammatory bowel diseases (IBD) such as Crohn’s disease and ulcerative colitis.70 This is due to stigma

around discussion of bowel habits which is often perceived as a sensitive issue.26 Social isolation is made worse when

physicians appear to provide inadequate information or medical support to people with IBS.76

Perceptions and attitudes of healthcare professionals to people with IBS

2.3


32

It would be nice if [IBS] was not looked at as a woman’s psychological issue

and treated like the medical condition that it is.

Medical practitioners have not been overly helpful and it takes too long for

someone to take you seriously. IBS symptoms can be very severe and debilitating,

and it is exhausting during a flare-up trying to obtain medical assistance.


Healthcare professionals often say it is all in my head - my naturopath thought

otherwise and found supplements that really helped.

Educating the public would be great - and caregivers, I know more than my

family physician.

Ten patients interviewed in 2014, all attending an outpatient clinic and suffering from severe IBS, reported that their

encounters with HCPs were negative, and often induced feelings of confusion and self-doubt.74

Patients described positive interactions with their physicians as “being listened to”,”being believed”, and “being

taken seriously”.74 Those patients with severe IBS described how they often felt a need to defend themselves and try to

retain their sense of self-worth in the face of trivialisation and disbelief by HCPs.74

When it’s bad it can be debilitating; you can’t leave your house, you’re

in pain, and it can be very embarrassing. And my doctor has basically

said ‘sorry, there is nothing I can do’. Sometimes I’m made to feel like I’m

making it up.


I think they’re [healthcare professionals] frustrated. They’d much rather

you walk in with something they can fix on the spot. I think they can see

IBS patients as a lot of trouble, and I get that. First, IBS patients tend

to be people who don’t get really listened to by anybody, because they

sound like a bunch of whiners.


32% agreed with the statement: “healthcare professionals do not take IBS seriously.”

25% agreed that “my healthcare professional should invest more time and energy into educating

me about my IBS.”

22% agreed that “healthcare professionals say you have IBS when they have run out of ideas.”


33

In an international survey involving 513 IBS-D patients, 27% agreed that “IBS is a condition that healthcare

professionals don’t understand”.31

In a survey of over 500 patients with IBS-D:30


34

THE PATIENT JOURNEY AND CHALLENGES TO ACHIEVING TREATMENT

Summary*

On average, it takes four years for an individual to receive a definitive

diagnosis of IBS. During this confusing and frustrating journey, patients

will try a range of self-management support options and will search

for advice from a range of sources such as the internet and newspaper

articles, many of which are not even proven effective for IBS.

On receiving a diagnosis, people with IBS can struggle to get the

support and effective treatment that they need to manage their

symptoms. In their lifetime, those with IBS will consult with more

than four different physicians or healthcare providers about their IBS

symptoms.

Without a collaborative approach to the management of IBS, there

is a risk that those with the condition will become lost in the system

and left without effective treatment.



35

In an online study involving 1,966 respondents, individuals with IBS were found to consult with more than four different physicians or HCPs about their IBS symptoms in their lifetime.46 On average, those with IBS reported having seen a physician for their symptoms three times during the previous six months, and during the previous year, they reported seeing a PCP (89%) or a gastroenterologist (55%).46

Research has shown that people with IBS often experience a confusing and frustrating journey, both in the path

leading to diagnosis and following diagnosis, in finding adequate support and treatment.26

Research shows that patients will wait on average for four years before a diagnosis of IBS is established.23 During this

time, patients will often move between seeking self-help support options, searching for advice from the internet28

and from family and friends, before eventually engaging with HCPs.24 In a recent study (2015) of

3,254 people with IBS, 67% stated that they experienced symptoms for more than a year before seeing a HCP.24

My GP didn’t help at all… He referred me to a gastroenterologist and

there was a three-month wait... I explained the whole story to him; he

was pretty good, but he didn’t really help me. Some people said he was

amazing. I didn’t have a choice. I wanted somebody who would have

a whole plan in place to deal with IBS. He had no plan at all. He just

said [he would do] an endoscopy and colonoscopy and we’ll see what

happens. They scheduled that, got it done and found nothing. He said

hopefully I’ll just heal on my own after a few months and, if not, we can

get further tests. The last step, because we’d done everything, was to

send me for imaging to check the small bowel.

Experiences of navigating the healthcare system as a patient

Canadian person with IBS45

3.1


36

From recent literature, management guidelines and patient surveys, it is possible to show the current typical pathway

that patients with symptoms due to IBS may experience, to reach a diagnosis of IBS.6,17,20,24,46,47,77-80

I saw a gastroenterologist in 2007 and had a colonoscopy done in 2008

that did not show any physical issues. Diagnosed with IBS straight

after the colonoscopy. Only three appointments with the specialist.

Told not to worry, because there is little importance associated with IBS

(not a cancer), need to ‘learn to live with it.’ Asked if it was temporary

or permanent, but told it was chronic but not constant, it could

present at any time but not all the time (stress is a factor). Healthcare

professionals pay little attention to IBS, [and I’m] not offered any

specific treatment. It seems that there is little investigation in this area.

Spanish person living with IBS45


37

The typical pathway to a diagnosis of IBS

The individual has mild symptoms, which may be ignored until they become worse – once their symptoms become severe they

will consult a HCP.9,81

Symptoms of constipation, diarrhoea, abdominal pain and fatigue may escalate and

increasingly affect QoL, including the ability to work or socialise.73,80

The individual becomes increasingly concerned and looks for advice online or from

family members.28,45

The initial approach is often self-medication by purchasing OTC medications, including antispasmodics, anti-diarrhoea agents and

analgesics to control symptoms.21,22,24,30

When symptom frequency, duration and severity increases or QoL is significantly

affected,30 an appointment will be made to see a PCP.33 However, less than half of those

suffering from IBS will actually consult a physician.78

Most PCPs are unsure about IBS causes and treatment effectiveness, leading to varied

therapeutic approaches and broad but frequent use of diagnostic tests, outpatient

procedures and scans conducted to help make a diagnosis.33,78

A PCP will diagnose in about one-third of IBS cases, with gastroenterologists diagnosing the

rest of the patients.33

The PCP will recommend diet and lifestyle changes first, followed by other treatment

options.33 The PCP may commence a variety of tests to exclude other conditions.78 The PCP

may make a tentative IBS diagnosis from the start, but will still tend to use additional testing

to confirm it.78


38


39

During this time, individuals can experience a revolving door effect of

ongoing symptoms leading to repeated referral and investigation,82,83 which is both costly to the health service and

frustrating for the individual, and leaves them feeling despondent and reticent to

visit their PCP again.21,26,83

People with alarm symptoms, those in whom there is genuine uncertainty about the

diagnosis, and those whose concerns have not been successfully allayed in their consultations with the PCP should be referred for a specialist

opinion from a gastroenterologist.20,78,84

Many patients with IBS may find that they are bounced around the medical field for

many years with varying diagnoses because of the lack of interest or profound frustration

by the physician in treating IBS, possible stigma of this disease as being a psychiatric

entity, or lack of clinical, physical or laboratory diagnostic criteria.21

Without a referral, patients lack a clear next step for further support or advice. It

may be years before they consider seeking advice again.45

If the patient is referred, the gastroenterologist may conduct a physical examination and

arrange a series of further tests, including a colonoscopy, laboratory tests and imaging

studies, to eliminate other conditions.47,85 At this point the specialist may diagnose IBS.45

With a diagnosis received from a gastroenterologist, the patient may look for

more IBS-specific information online, e.g., tips on managing IBS through diet/treatment.28,45

Follow-up appointments with PCPs are made to check whether treatment

recommendations are relieving the patient’s symptoms and to adjust/

maintain effective treatment.33

The individual may have multiple appointments with the PCP while awaiting

test results.33,82 The use of multiple diagnostic tests to exclude IBS, and uncertainty around

treatment approaches in primary care, leaves them feeling confused and frustrated.26,78

There is a requirement for a collaborative approach to the management of patients with IBS between primary and

specialist care in terms of referral, diagnosis, treatment choice and ongoing management. Otherwise there is a risk

patients will become lost in the system and learn to live with their symptoms.45


40

FINDING SOLUTIONS TO ACHIEVE MORE EFFECTIVE SYMPTOM CONTROL

Summary*

Guidelines for the management of IBS developed by the Rome

Working Group, the World Gastroenterology Organisation and

several national gastroenterology societies set out a universal

standard of care for IBS but they are not routed in everyday clinical

practice. There is an absence of simple management guidelines to

support an individualised treatment approach.

The lack of standardised pathways contributes to variation of

medical care in terms of symptom control. A 2016 patient survey

found that when it comes to their symptoms, 79% felt they had

either no control, or control over only some of their symptoms.

Difficulties in communication and lack of time to discuss symptoms

or ask questions are the most common problems experienced by

patients when interacting with their HCPs. The importance of a good

patient-physician relationship is increasingly recognised as part of

best practice IBS management and improving clinical outcomes.



41

People with IBS want to be heard and understood – and therefore physicians should be aware of

the negative impact of symptoms on individuals’ daily lives, and the frustration that results from

repeatedly trying treatments that have little effect.26,30

However, people often report that they don’t feel listened to by HCPs, and feel ‘discredited’ when physicians

appear unsympathetic to their concerns and when they sense that the impact of IBS on their QoL has not been taken

into consideration.30,75 A lack of effective advice and treatment from HCPs can result in people giving up seeking

medical help and instead beginning to try either dietary modifications or alternative treatments.60 In some cases,

dissatisfaction regarding physician visits can lead patients to feeling let down by healthcare services.60

Individuals express the desire to have more time in their healthcare consultations.30 Research conducted on

330 respondents shows that when given time to discuss their symptoms, those with IBS may be more likely

to provide details about their experiences, and studies have shown that if uninterrupted, 78% of patients

will only need two minutes to complete their initial statement of complaints, even in a busy tertiary referral

centre.86 Keeping a food diary or logging events that correlate with the onset of symptoms are increasingly being used

to allow people time to provide detailed information.21,87

It is recognised that there is a need for more effective interviewing and communication skills in

gastrointestinal medicine.88 Increasingly, the importance of a good physician-patient relationship and use

of person-centred care principles is being perceived as part of best-practice IBS management.56,89

As highlighted through surveys and through patient reporting, current treatment remains unsatisfactory for most

patients23 and the majority complain of inadequate control of their symptoms.51 A 2016 survey, involving 2,916

individuals with IBS, found that when it comes to their symptoms, 34% have reported to have no control over any of

their IBS symptoms, and 45% had control over only some of their symptoms.51

Achieving more effective symptom control in IBS: What should physicians and other healthcare professionals do?

4.1


42

Waking up with cramps that have me doubled over in pain and last several

hours, constipation - never feeling empty - bloating, at one point looked like I

was pregnant.


Adapting communication skills for physicians and improving the relationship between physician and patient has

been shown to:56,75,90


43

There is also often a mismatch between individuals’ beliefs about their IBS and the physicians’ understanding.75

It is important that clinicians understand their patients’ beliefs and then provide education and reframe their

understanding before patient acceptance occurs.75,90 However, individuals who remain dissatisfied with information

provided about their diagnosis will continue to pursue new diagnostic tests and treatments.75,91

The quality of relationship between physician and patient in IBS is more strongly associated with the way in which

individuals feel they are managed by their physician than the physician’s ability to offer a successful treatment.26

When healthcare providers take the time to discuss lifestyle changes with their patients, satisfaction

with the consultation has been shown to increase.45 Quicker referral to a specialist and greater empathy

from the PCP also results in increased patient satisfaction with the consultation.45

Explanatory models (EM) are useful tools for understanding how individuals relate to an illness and expectations

for treatment.26 However, ‘failure to address differences between patients’ and physicians’ EMs can disrupt

the treatment process’.26 Development of an integrated EM which combines the individual’s symptom experiences

and aetiology of IBS has been shown to have the potential to enhance the physician-patient relationship and improve

treatment outcomes.92 To improve success, research suggests that the individual’s personal EM should be addressed

during a consultation and any successive medical interventions should be aligned with the patient’s disease perception.26

Disclose more meaningful information from individuals.

Produce greater patient adherence to treatment.

Reduce the severity of symptoms.

Reduce emotional and psychological distress.

Reduce the number of subsequent consultations.

Increase patient satisfaction.

Result in improved clinical outcomes.

Drossman has developed a 15-point plan to improve communication between patients and physicians, which can be

summarised into four key themes:90

Listening to the patient

Providing a positive diagnosis and explaining it simply

Creating an optimal individualised management strategy

Following up

The 15-point plan emphasises the need for the following behaviours: active listening, observing, facilitating, accepting

the reality of the disorder, eliciting the patient’s viewpoint from their personal and sociocultural perspective, empathy,

avoidance of stigma and validation of the patient’s feeling.90

The World Gastroenterology Organisation (WGO) has also stressed the importance of the physician–patient relationship

and recommended attention to the following, during the initial clinical assessment and follow-up.93

Identify and explore the patient’s concerns and accept that the symptoms are real.

Recommendations from the WGO:93

Appreciate the impact of the symptoms of IBS on the patient.

Discuss the anxieties that the patient has about their symptoms, help to answer

questions, reassure, and eliminate unnecessary worries.

Identify and help to resolve stressful factors.

Reduce patient avoidance behaviour, as this form of behaviour has a negative effect on

the prognosis.

Provide general guidance on diet and exercise, including where appropriate, high-fibre

diets, regular meals, hydration and physical activity.

1

2

3

4

5

6


44

1

4

2

3

Survey studies that have used questionnaires have shown the benefit for patients with IBS of being able to discuss and

detail their symptoms in a written form.24,46,47 In 2014, Marquis and colleagues advocated the use of an IBS symptom

diary and event log for the measurement of the IBS symptom experience from the perspective of the patient.87 Those

with IBS should record their symptoms, or at least the frequency of them, to help explain the severity of their IBS.

Improving communication: What should people with IBS do?

4.2

Speak Up Early: Talk to a HCP as soon as possible after the onset of symptoms, instead of

talking to a friend or family.

The AGA recommends to patients three steps to improve communication with their physician:24

Speak Up Completely: Detail the symptoms to your HCP, including how the symptoms

impact life, mental health, work, and social interactions.

Speak Up Often: Inform the HCP if symptoms return despite initial treatment efforts so

that alternative treatment approaches can begin.

1

2

3


45

Despite great strides in the understanding of IBS in recent years,21 there is still a lack of understanding regarding the

causes of IBS and the complex interactions between the gastrointestinal symptoms and associated symptoms.3

Properly diagnosing IBS can be challenging and uncertain for HCPs for several reasons:94

There is no biological marker of IBS.

The symptoms of IBS are often difficult to quantify objectively.

The symptoms can vary among individuals with IBS.

Many organic conditions can masquerade as IBS.

The last point in particular, and the uncertainty often prompts HCPs to conduct a series of diagnostic tests, and leads

many HCPs to view IBS as a diagnosis of exclusion.94 Additionally, many individuals can fear that some other more

sinister diagnosis (especially cancer) has been overlooked.60,75

Best practice diagnostic criteria recommend clinicians make a positive diagnosis on the basis of symptom criteria,

in the absence of any alarming features, and urge physicians not to think of IBS as a diagnosis of exclusion despite

its broad differential diagnosis.4,56,85,94 This recommendation is based on evidence that diagnostic testing has a

generally low yield, is not cost or clinically effective, or supported by evidence.56,94,95

The need for simple, evidence-based guidelines for IBS

4.3

Simple guidelines to support a confident diagnosis

At this time, there remains no treatment or pathway regarded throughout the world as being universally

applicable to the management of all IBS patients.93 Recommendations regarding IBS management have been broad

in their application, and directed to all individuals in a one-size fits all approach.81 There have been several published

management guidelines for IBS, but these have mainly focused on diagnosis, with supportive approaches to patient

management.17,19-21,96

Simple guidelines to support effective management


46

1

4

2

3

In a step toward supporting clinicians to take more effective treatment approaches, in 2014, the American

College of Gastroenterology (ACG) performed a systematic review on the available treatments for IBS.17 The

primary objective of the review was to assess the efficacy of available therapies in treating IBS compared

with placebo or no treatment. The secondary objectives included assessing the efficacy in treating IBS according to

predominant stool pattern reported (IBS with constipation, IBS with diarrhoea, and mixed IBS), as well as assessing

adverse events.17

The WGO Guidelines on IBS, which were updated in 2015, also include a summary of the evidence of the

efficacy pertaining to different treatments used in the management of IBS and set out recommendations

for treatments based on this evidence.93 The recommendations align to overall symptoms and to specific

symptoms including pain, bloating and distension.93

A step wise approach is now recognised as the optimum approach to IBS management.18,56,81 This starts with

a confident diagnosis, explanation, reassurance, dietary and lifestyle advice sufficient for milder symptoms,

and moves on to pharmacotherapy, selected according to the most predominant symptom, or combination of

symptoms, which is considered the ‘next step’ for those with moderate to severe IBS.56,81

A treatment algorithm published in 2017 developed by a multi-national working group of experts aims to help primary

and secondary care physicians navigate key stages to reaching a positive IBS diagnosis and provide guidance

on how to prioritise the use of specific management strategies.98 Through provision of simple visual tools, it

illustrates the key stages to reaching a positive diagnosis of IBS and sets out a simple, stepwise approach to patient-

centred management targeted toward the most bothersome symptoms, taking into account patient preferences.98

Guidelines including those from the ACG and National Institute for Health and Care Excellence (NICE) are beginning

to recognise the need for robust evidence to support treatment choices for patients with IBS.17,20 However, guidelines

that direct physicians as to how to prioritise the use of different agents are still lacking.99 Understanding that IBS has

a complicated physiology with a complex manifestation of symptoms that vary from individual to individual, is key to

future successful management of IBS.15,94


47

Because of a lack of standardised pathways for IBS, global variations have been reported in the medical care

for people with IBS in terms of control of symptoms.21,93,97 More recently however, there has been increasing

recognition of the benefit of individualised treatment pathways and management based on tailored approaches for

people with IBS.56,81,83

GLOSSARY

48


Acupuncture: An alternate or complementary medical technique used to relieve pain; an ancient Chinese medicine technique involving the insertion of fine needles under the skin in specific locations.

AGA: American Gastroenterological Association.

Algorithm (diagnostic or treatment): A set of instructions or rules that will help to calculate the answer to a question.

BadGut®: The Gastroenterological Society and The Canadian Society of Intestinal Research are charitable organisations using this brand.

Bloating: A feeling of fullness or swelling in the abdomen that often occurs after meals.

Bristol Stool Form Scale (BSFS): A scoring system to evaluate symptoms related to defaecation, change in stool frequency, and a change in stool form or appearance.

Carer (caregiver): A non-healthcare professional who is involved in caring for a person with IBS.

Clinical efficacy: The extent to which an intervention or treatment is effective when studied under controlled conditions.

Cochrane review: A systematic review of the evidence from primary research in human health and health policy, produced by the Cochrane Collaboration, and which is available electronically from the Cochrane Library.

Coeliac disease: Coeliac disease is an autoimmune condition which is triggered by the protein gluten. Gluten triggers an unusual immune response that leads to damage of the millions of microscopic finger-like projections (villi) that line the inner wall of the small intestine. Common symptoms include anaemia, diarrhoea, constipation, weight loss, nausea, fatigue and abdominal pain.

Cognitive behavioural therapy (CBT): A form of psychotherapy that focuses on thinking, behaviour, and problem-solving, to help people in the ways they think (cognition) and in the ways they act (behaviour).

Colonoscopy: A visual inspection of the inside of the lower bowel using a colonoscope to look for abnormalities of the lining of the bowel; during colonoscopy, a tissue biopsy may be taken for examination by microscopy.

Co-morbidity: The co-existence of more than one disease in an individual.

Compliance (or adherence): The extent to which a person adheres to the health advice agreed with HCPs.

Constipation: Bowel movements are infrequent, hard, dry and difficult to pass.

Crohn’s disease: A chronic inflammatory bowel disease (IBD) that can affect any area of the gastrointestinal tract, from the mouth to the anus. The inflammation involves the lining of the digestive system and symptoms include diarrhoea, abdominal pain, fatigue, weight loss and blood/mucus in your faeces. This is unrelated to IBS.

Diarrhoea: Frequent and watery or loose bowel movements.

Differential diagnosis: Two or more diseases, with similar symptoms, that need to be distinguished to determine the definitive diagnosis.

Diverticular disease or diverticulosis: These are interchangeable terms meaning the presence of small sack-like pouches of the colon lining (diverticula) that balloon through the outer colon wall, occurring most frequently in the lower section of the colon, which is located on the left side of the pelvis. Diverticulosis is often present without any symptoms. Many symptoms are similar to those of IBS, and often include changing bowel activities such as constipation or diarrhoea, or alternating between the two extreme stool consistencies.

Diverticulitis: Is when the diverticula (noted above) become inflamed and/or infected. There might be an increase in diarrhoea, cramping and bowel irritability, and symptoms can include intense pain, abdominal cramping, bleeding, bloating and fever.

Dyspareunia: Pain during or after sexual intercourse, due to medical or psychological reasons, found more commonly in women.

Endoscopy: A diagnostic procedure that uses an endoscope to visualise, diagnose or treat a condition of the gastrointestinal tract (gastroscopy, colonoscopy, sigmoidoscopy).

Epidemiological study: A study of how a disease is distributed across different populations, which can be used to plan and evaluate strategies to prevent illness.

49


Extra-colonic symptoms: IBS symptoms not directly associated with the bowel, such as low back pain, bladder symptoms and gynaecological symptoms.

Flatus: Gas or wind in the intestines, produced by the normal activity of bacteria in the bowel.

FODMAP: Fermentable, oligo-, di-, and mono-saccharides and polyols (FODMAPs) are short-chain carbohydrates that can be poorly absorbed by the small intestine in some individuals.

Functional bowel disorder (FBD): A group of gastrointestinal disorders with symptoms attributed to the mid or lower gastrointestinal tract without a structural or biochemical cause, and includes IBS.

Gluten: A protein found in several types of grains, including wheat.

Gluten intolerance or gluten sensitivity: Non-coeliac gluten sensitivity is a non-allergic response to one of the many other components of wheat, possibly a different protein, or a carbohydrate.

Healthcare professional (HCP): Physicians, nurses and allied health professionals.

Health-related quality of life (HRQoL): A combination of an individual’s mental, physical, and social wellbeing and not just the absence of disease.

IFFGD: International Foundation for Functional Gastrointestinal Disorders.

Inflammatory bowel disease (IBD): Is a term that primarily refers to two conditions or diseases of the intestines: Crohn’s disease and ulcerative colitis. These diseases have a few similarities but do differ significantly in two key ways: the area of the digestive tract affected and the extent of the inflammation. These diseases are unrelated to IBS.

Irritable bowel syndrome (IBS): A functional bowel disorder (FBD) which has no structural or pathological ‘cause’, and is characterised by symptoms that include pain, bloating, diarrhoea (IBS-D) and/or constipation (IBS-C).

Literature review: A summary of the evidence contained in several studies.

Meta-analysis: A quantitative, formal, epidemiological study design used to combine the results of several published studies that address the same question, enabling conclusions to be reached about that body of research.

Prevalence: The proportion (percentage) of people with a particular disease within a given population at a given time.

Prognosis: The likely course or outcome of a disease.

Randomised controlled trial (RCT): A comparative study that includes participants who are randomly assigned to treatment and control groups; patients are followed to examine differences in outcomes between the groups.

Refractory IBS: IBS that does not respond to first-line treatment after 12 months and who develop continuing symptoms.

Stool: Solid waste that is discharged in a bowel movement.

Transit time: The length of time food takes to pass through the gastrointestinal tract.

Ulcerative colitis: A chronic inflammatory bowel disease (IBD) consisting of fine ulcerations developing on the inner lining of the large intestine. This is unrelated to IBS.

WGO: World Gastroenterology Organisation.

50


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54


ADDENDUM


55

Ref 31: IBS-D Quantitative Market Understanding Study (Patients): 260131926-2

IBS-D Quantitative Market Understanding Study, conducted by Kantar Health in the UK, Australia, Canada,

France, Germany, Italy and Spain. 30-minute online survey conducted with IBS-D patients throughout January

to April 2016. Total sample was 513 IBS-D patients across 7 markets. Patients must be diagnosed with IBS-D

and have experienced both diarrhoea and stomach pain/discomfort/spasm for more than 1 year. Patients

must also have taken either prescription medicine or OTC treatment for their IBS-D.

Ref 32: Kantar Health – National Health and Wellness Survey

National Health and Wellness Survey is part of the Patient Centered Research Program. NHWS is a cross-

sectional survey, representative of the total male and female adult populations in each 5EU market (France,

Germany, UK, Italy and Spain) that captures information directly from respondents online. To ensure a

representative sample, particularly in the older population (>65), online recruitment was supported by

computer assisted web interviews (CAWIs). Data was collected during March – May 2013 and the length of

interview was 45 minutes. A total of n=62,000 respondents were interviewed for this study, of them n=2,845

reported being diagnosed with IBS by a physician (IBS-C - n=450, IBS-D n=859, IBS-Mixed – n=1,536).

Ref 33: IBS-D Qualitative Market Understanding Study (HCPs and patients): 260131926-1

IBS-D Qualitative Market Understanding Study, conducted by Kantar Health in the UK, Australia, Canada,

France, Germany, Italy and Spain. One-hour in-depth interviews conducted face-to-face for Healthcare

Professionals and face-to-face or over the telephone for patients throughout September and October 2015.

Sample (each market): n=8 Gastroenterologists; n=6 Primary Care Physicians (PCPs) and n=6 IBS-D Patients.

Gastroenterologists were recruited from mix of either office or hospital setting (not in UK) and must see at

least 12 patients with IBS-D in a typical month. PCPs must see at least 5 patients with IBS-D in a typical month.

All HCPs must prescribe or recommend prescription or OTC treatments for IBS-D patients. Patients must be

diagnosed with IBS-D and have experienced both diarrhoea and stomach pain/discomfort/spasm for at least

2 years. Patients must also have taken Imodium (loperamide) in the past 12 months, prescribed or OTC and

sample was a mix of mild/moderate/severe IBS-D. Interviews were recorded and partially transcribed, and

complete content analysis conducted. During the interviews with both patients and HCPs, a Product Profile of

a new class of IBS-D prescription product was shared with respondents.

56


Ref 34: Improving Constella Patient Persistence in IBS-C: 260141604

IBS-C Qualitative Study, conducted by Kantar Health in the UK, Canada and Spain. 45-minute video-depth

interviews conducted with IBS-C patients throughout July and August 2017. Sample (each market): n=1

lapsed user of Constella (linaclotide) after 1 month, n=1 lapsed user of Constella (linaclotide) after 2 months,

n=1 continued user of Constella (linaclotide) for at least 1 month. Patients must be diagnosed with IBS-C

and have been prescribed Constella (linaclotide) for their IBS-C. Interviews were recorded and partially

transcribed. During the interviews, a concept aimed at facilitating discussions between HCPs and patients was

tested with IBS-C patients.

Ref 45: IBS Triggers Research

IBS Triggers Research, conducted by Allergan and supported by Cello Health Insight, combines findings from

Phase 1 and Phase 2 research in the UK, Canada, Sweden and Spain. Phase 1 involved 2 hour focus groups

with a total of 13 IBS-C patients and 10 IBS-D patients across central locations (London, Toronto and Sweden)

during January 2017. All research was viewed live by Allergan. Phase 2 involved 60 minute IDIs with a total

of 11 IBS-C patients and 11 IBS-D patients cross central locations (London, Toronto and Barcelona) during

February/March 2017. Research was viewed live by Allergan in London and Barcelona, and remotely

in Toronto.

Ref 51: Gastrointestinal Society 2016 Survey Results Irritable Bowel Syndrome (IBS). All data. 2016.

Original data sourced from the Gastrointestinal Society IBS Survey 2016. This data set is available on request

from The Gastrointestinal Society at [Gail Attara] [email protected].

Ref 25: Gastrointestinal Society 2016 Survey Results Irritable Bowel Syndrome (IBS). Irritable bowel

syndrome patient open-ended comments from survey. 2016.

Patient testimonials sourced from qualitative, written responses to the IBS Survey 2016 conducted by The

Gastrointestinal Society. Testimonials are available on request from The Gastrointestinal Society at [Gail Attara]

[email protected].

57


ISBN: XXXXXXXXX-XX

INT/0651/2017

Date of Preparation: December 2017

With significant contribution from the Gastrointestinal Society

This report has been funded and facilitated by Allergan

IBS GLOBAL IMPACT REPORT 2018 - Gastrointestinal Society

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Transcript of IBS GLOBAL IMPACT REPORT 2018 - Gastrointestinal Society